17th Workshop, Barcelona: "The Value of Orphan Drugs: Efficient for the Patients, Useful to Society?"

17th Workshop of the EURORDIS Round Table of Companies

"The Value of Orphan Drugs: Efficient for the Patients, Useful to Society?"

 

September 28th, 2012

Barcelona, Spain
 

17th workshopIn the current economic climate, the actual value of orphan drugs is misunderstood by society. The concept of value has different meanings for different stakeholders including clinical efficacy, economic value and improvements to the quality of life for patients. One strong recurrent message was the need for early dialogue between all parties involved, in order to improve access to treatment for patients, adaptive licensing being a potentially powerful way forward.
 

Participants : 74

Programme

Concept Paper

 

Proceedings

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A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases